Diet Advice?

[Essentials]

Dear all,I'm happy to have found this support page for Behcet. I'm female, 39 years from Germany, suffering from ulcers since 2019, right now on an episode since end of August I have been to many doctors and hospitals. Right now I am treated at the university hospital in Leuven (Belgium). State of the art I would say. I did take Colchecin in the past during an episode and I think it caused an ugly scar, though ofcourse could be other reasons too. Currently I am advised to take it after an episode to prevent further episodes. Right now I am just waiting for the episode to end.

I can't help but wonder in how far nutrition plays a role in flare ups. My doctor said that some patients reported that lemon causes flare ups. What are your experiences? Probably this has already been discussed, so if you could refer me to the relevant discussion I would be very grateful!

Is there any international support group known?

Lastly a tip on what worked well for me: applying myrrh on a newly developing mouth ulcer prevented growth and outbreaks.

Enjoy your day,

A

[Ficklefeline]

Hi, just thought I'd share an article which examines the link between foods higher in histamine and flares in behcets - lemons is one! gulhanemedj.org/articles/re...

Sorry you're having a hard time, look after yourself.

[rooser1]

for me and a few others, weve cut sugar out completely and do not eat processed foods. That alone was the turning point for my health. I also be sure to include plenty of anti inflammatory herbs like rosemary and oregano. (I eat a high protein, high fat, low carb diet and can get into ketosis very easily... I have used keto before to induce an anti inflammatory effect during a few flares as well)

as for your lemon query- i personally have zero issues with lemon but i also have low stomach acid so I can see how it helps me.

i have seen others post about a sensitivity to nightshades (im okay with those too).

[Icefire]

Hi there, I'm a firm believer in diet first and then meds if you need them. I had a horrible diet full of junk food and sugar when teenage. That is when I was hospitalised and couldn't cope well with life. I watched a lot of day time TV instead of going to school because I was exhausted all the time. Mouth ulcers were constant and genital ulcers monthly I think.

As I got older I started to get better at eating vegetables and reducing sugar. Symptoms improved. I also took up running, starting with 4 minutes interspersed with walking on a plan that very gently increased till I could easily run 10k. I didn't get a diagnosis for 24 years so I had to work it out myself.

I studied nutrition at a high level. I find methylfolate reduces mouth ulcers and that is currently the only supplement I take regularly. (Follic acid is the chemical form that some people cannot metabalise so make sure it is methylfolate if you try it). I've cut out all (Nearly all) Ultra Processed Food and that's made a real difference.

My diet is based on whole foods, minimally Processed with loads of green leafy veg. (Well I like to think so anyway!!). Biscuits and cakes either home made to low sugar high nutrient recipes or eaten in extremely small portions.

I've quartered my intake of rice, potato and flour etc as I can see it increase blood sugar profoundly even though I'm a healthy weight and very active.

I cut out dairy and gluten for two years. Even though I thought that was helpful at the time I no longer bother and actually gut function is the best it's been. I regularly have full fat Greek yogurt, kefir, cheese and butter. Bread wise I tend to stick to a small piece of sourdough. Here in the UK most shop brought bread has a lot of emulsifiers, which are known to cause gut issues.

My latest bit of research involves compression socks to reduce number of erythema nodosum spots. They seem to be better than they were but I'm not 100 percent sure it's the socks. I don't know if the erythema nodosum has something to do with covid in my case. I digress.

Low sugar and refined carbs. Make from scratch where you can. Eat tonnes of veg. That is my advice. Let me know how you get on.

[Essentials]

Thank you so much everyone, that is very very helpful advice! I guess I have to accept (and I think this is also psychological?) that I am sick and need to take good care of my body and can not eat everything that I want to eat. I eat a lot of sugar when stressed, and I think this is indeed a big issue. Thanks everyone and be good!

[Icefire in reply to Essentials]

Take good care of your self and hopefully you will be able to think of yourself as well. Maybe have a look at Dr Chaterjee and the blood glucose goddess for inspiration. Xx

[Dogwind]

Hi

Whilst I have Behcets I am fortunate I can eat just about anything and everything without ill effect, my wife has IBS and for years she was told to avoid starchy foods and dairy and eat plenty of greens etc, standard advice, to no avail.

We tried the FODMAP diet and discovered that my wife could eat starchy foods and dairy aplenty and it was the leafy greens that were causing her problems. Not very interesting, but onions crucify her but she can eat shallots and garlic without any Ill effect.

Morale of the story, you need to explore what YOUR body can/cannot tolerate and work with that. We are all unique.

Good luck with your journey.

[USPolarBear]

Hi. I have food and environmental triggers.

Colchicine helps with the ulcers, and scarring is actually a Behcet's symptom. I have a lot of them all over. For pain of active genital ulcers I actually use the numbing gel they make for baby teething and mouth sores (benzocaine) . My doctors laugh but it makes a huge difference, because they REALLY hurt.

I paid for some private testing for a few things that helped me isolate food issues & solve for gut biome issues (lots of antibiotics and other medications trashed mine), and highlight vitamin and mineral deficiencies (B8 vitamin was why I had memory issues, brain fog for instance).

I don't know what testing companies you might have where you are, but it removed a huge amount of guessing and saved me months of elimination diets (which I tried and helped a little, but not enough).

Here are the testing companies we have in the US that I used, that may help you find something like it in Germany if you are interested:

Gut Biome (Fecal DNA) testing and custom mixed probiotics: Viome

Vitamin and mineral (Hair Testing): 5Strands (can buy on Amazon here)

Vitamin & mineral supplements helped in the short term and once I got the food and gut biome stuff sorted, I didn't need a lot of the supplements anymore.

Hope you figure out some triggers soon!